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Measuring Transplant Outcomes by Collecting Data on Children Born to Uterus Recipients

Proposal Overview

Status: Public Comment

Sponsoring Committee: Vascularized Composite Allograft (VCA) Transplantation

Strategic Goal: Improve waitlisted patient, living donor, and transplant recipient outcomes

Read the request for feedback (PDF; 01/2020)

Contact: Tina Rhoades

Submit a comment

Click on the Submit a comment button above to provide your feedback. Your comments relating to the proposal will be displayed in the comment section below (within 24 hours).

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What is current practice and why address it?

Uterus transplantation in the U.S. is rapidly growing. As such, the health of the recipient and post-transplant outcomes is a key concern to the OPTN and the transplant community. Currently, very little data about children born to women who have had a uterus transplant is reported to the OPTN, and only on a voluntary basis. In order to monitor post-transplant outcomes and the health of the recipient, feedback is requested to inform a future project about what data to report on children born to uterus transplant recipients.

What’s the concept?

  • To consider what, if any, additional, appropriate data that could be reported about children born to uterus transplant recipients:
    • At birth
    • As follow-up
  • Consider how long after birth should information be reported.
  • Identify any challenges a requirement to report additional information could present.

What this feedback could accomplish

  • Could help develop future data reporting requirements.

What this concept wouldn’t do

  • Collect unnecessary data on children born to uterus transplant recipients.
  • Mandate data collection at this time.

Terms you need to know

  • Vascularized Composite Allograft (VCA): Transplant of multiple structures, which may include connective tissue, skin, bone, muscles, blood vessels, and nerves.  For example, face and hand transplants are two of the most well-known types of VCA transplants.
  • Click here to search the OPTN glossary.

Comments

Baylor University Medical Center | 02/03/2020

We appreciate the opportunity to provide feedback on Measuring Transplant Outcomes by Collecting Data on Children Born to Uterus Recipients. Our center’s experience with uterus transplant for the past several years, including delivery of several healthy babies, puts us in a unique position to inform this work. Children born thus far, in our study and in Sweden, are on target for developmental milestones. In studies of delivery following solid organ transplant in immunosuppressed individuals it has been observed that there is a higher incidence of low birth weight infants and pre-term labor. Delivery following uterus transplantation is controlled and occurs prior to 40 weeks gestation. Infants born to recipients in our program and in Sweden have been of appropriate weight for gestational age and growth on par with expectations following delivery. We question the value of collecting information on healthy infants but can support follow up of children delivered after uterus transplantation for a maximum of 2 years, including only information gathered at routine pediatric visits. As with living donors and recipients, we educate our patients on the importance of and requirements for follow up. Even with those efforts, data collection may pose challenges if recipients are unwilling to share information directly or allow information to be shared by the pediatrician. We recognize the importance of monitoring of this novel type of VCA transplantation and look forwarding to continued collaboration with UNOS/ OPTN and other programs.